To Parents in the Storm

I don’t write about Stella very much anymore. Not because there’s nothing inspiring to share, but for fear of crossing boundaries and exposing a person who is all her own. That said, I know that there are still parents around the world reading this blog because their baby or young child is facing challenges with feeding / eating or vision / sensory / development. I know many of you are terrified, just like I was.

Unfortunately, I can’t impart directly into your brain the sense of faith and relative calm I now feel having been through the storm. But I can tell you that when I see Stella eating salmon rolls and cucumber rolls at a sushi restaurant, I think of you. When Stella reads a chapter book and is totally engrossed and properly using her bifocals (!), I think of you. When she comes home from school happy and recounts an interesting or funny anecdote from her friend, I think of you. There were many days when I simply couldn’t see the way through to these moments. But here we are. You’ll get here too.

Now and again, we go back to our old friend vision therapy; since summer we’ve been doing about 20 minutes a day at home and 45 minutes a week in the office. We still work on persistent toe-walking. She has true academic strengths and she also has to put in more effort in areas that others (parents and kids alike) take for granted. I still seek out ways to support her visual and overall development. But I don’t feel crushed by anxiety anymore. It’s been replaced by gratitude. Partly because Stella is thriving, not to mention extraordinarily creative. And partly because we as a family have emerged from a sort of mental cocoon and emerged more vibrant as a result. Cody and I are full of confidence for Stella and she for herself.

For my part, I learned to stand up for Stella and myself. I learned that being 100% typical is boring–and probably impossible. I learned that there is always hope.

If there is anything I can do to share that hope with you, please let me know. There’s plenty to go around.


Crossing over





  1. Paul Johnson · November 14, 2016

    Amber, that is so beautiful. Full of warmth and love. You are quite remarkable. Stella is beautifully bright. She is blessed to have you and Cody wrapping her in love, warmth and wonderful support. Be love and be proud!!!!!!! PS. Kansas get a little credit and a lot of love…


    • amberhj · January 14, 2017

      Thank you Paul! 🙂 And yes Kansas has been a wonderful addition especially for Stella!

  2. PaulJohnson · November 14, 2016

    Amber, please include Kim in your outreach. I am going to forward you beautiful chapter in ‘The Life and Times of Stella.’ Love you… >

  3. ksnaza · November 14, 2016

    Just wonderful, Amber!

    Sent via the Samsung GALAXY S®4, an AT&T 4G LTE smartphone

    • amberhj · January 14, 2017

      Thank you Karen! You know what a journey it’s been for us 🙂

  4. gailcornwall · November 14, 2016

    Loved this!

    Sent from my iPhone


    • amberhj · January 14, 2017

      Thank you so much Gail! Means a lot coming from you!

  5. Pragya · March 3, 2017

    Thank you for sharing your story with us! We are also planning for a Gtube wean for our son, and your words of wisdom brings comfort to my heart. We have been living in a survival mode, it feels like walking through a thunderstorm. Your words bring hope! I hope the very best for Stella and your lovely family!

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